Tyler Presnell on AM Northwest

From the AM Northwest website:

“Story Published: Mar 24, 2014 at 10:32 AM PDT

At 14, Tyler Presnell, his twin brother and his younger sister were in a violent car wreck, passengers in a car driven by a close family friend. That friend was 16 and had been licensed less than a week. The crash nearly killed Tyler, but it did not kill his spirit. Having gone through multiple surgeries, stints in intensive care, constant pain and months in a wheel-chair, Tyler knew that he had an important message to share. His speaking career started over ten years ago while he was still a patient in the intensive care unit at Legacy Emanuel Hospital in Portland, Oregon. Tyler speaks of his family, his lifelong recovery and the subsequent pain, and the challenge of living each day with over 80 percent of his short-term memory gone.

To find out more about Tyler or to have him speak at your school or organization click here.”

By the way, TBI survivor Tyler Presnell lives in the Pacific Northwest and is an accomplished poet. See him perform many of his original pieces on his YouTube Channel here. He’s also been doing outstanding public speaking for many years. You can contact him through his website to have him come speak to your group: www.tylerpresnell.org.

Chris Whedby’s journey with AVM

I was eating a nice hangover brunch in February 1997 when I got a “something’s really bad is going to happen” feeling. The next thing I remember is a fireman asking me who the president was. At some point on the way to the hospital I realized that I had had a seizure, but was too disoriented for that to have an emotional effect on me.

In the ER, I was treated poorly at first. I smelled like I stayed up late drinking beer, which I had. A good friend was visiting for two days, and we went out until 2:00 AM. I’m sure the nurses thought I seized due to alcoholic withdrawal. They sent me for a CAT scan, and shortly thereafter, they became very, very, nice. I was still fuzzy, but I began to get worried. A few minutes later, a doctor came in and explained that I had an Arteriovenous Malformation (AVM) in my left parietal lobe. (For any ER nurses out there, remember this. Y’all treated me like this was my fault.) I was given IV Dilantin, which really hurt. I was then told to go see a neurosurgeon, and a friend came to pick me up.

I went to see the neurosurgeon the next day. He explained to me wham an AVM was, and the treatment options. The first question I asked was “Have you done surgery on an AVM before?” When the answer was “no,” I basically got up and left. Someone had to be his first, but it wasn’t going to be me. Luckily, a friend of a friend was the president of the nurse’s union at the Oregon Health Sciences University hospital. She asked around, and found me the one doctor in town who specialized in AVM’s, Dr. Stanley Barnwell.

Upon consulting with Dr. Barnwell, we decided the best course of treatment was a two step procedure: a cerebral embolization, followed by Stereotactic Radiosurgery. Dr. Barnwell said he had done this many times before, and didn’t seem the slightest bit worried. I guess I wasn’t feeling too worried myself, at that point.

The next week, it was time for the embolization. I was partially awake during the procedure, but all I remember is him tapping at the catheter entry point near my groin, and a couple of jokes he told. In retrospect, I know he was checking on my brain functioning. Recovery was fine, and I went home the next morning.

Two or three days later, I went in for the radiosurgery. They put a halo on me and had me take a CAT scan. I cannot describe the pain. Neither valium nor morphine even touched it. It felt like my head was in a bench vise. (I later told my female friends that giving birth was nothing compared to this, and I didn’t even get a baby out of it,) After a CAT scan, I waited…and waited…and waited for the computer to process the information needed for the procedure. Finally, they were ready for me. My halo was bolted to the table, the docs left the room, and a robot arm began to circle my head. Later, the halo was removed (thank God,) and I went home.

The next day I looked like I had been beaten up by Muhammed Ali. I could barely open my eyes, as my face was so swollen. My friends looked at me with horror.

Then, everything was fine for the next five years. I thought I’d gotten away scot free. I went off seizure meds after three years of no symptoms, and all was good. Then, in 2002, I had a big, bad generalized clonic-tonic seizure. I went back on meds, and had a horrible couple of years going through one seizure med after another. One made me so ill I had to curl up into a fetal position with the lights off; another messed up my blood lipid profile, tripling my overall cholesterol; another gave me migraines. Finally, the one that worked was lamotrigine. I’ve been stable on that med for almost ten years.

I was in my second year of a Masters in Psychiatric Nursing Practitioner program when things started to go wrong. My attention and memory began to slip, and I became dyslexic. To move on to the next level of the program, I had to write an essay. That’s when I knew something was terribly wrong with me. I just couldn’t do it. I managed to spit out a couple of poorly written paragraphs, but it was rejected, of course. Then it started to go really wrong.

Soon, I couldn’t follow a conversation, would forget what I was looking for, would have to rewind movies several times to remember the plot line, etc., etc.. I was sure this wouldn’t last. I have a B.A. in Psychology, and was well read in brain science. I knew the brain was somewhat plastic, but was unable to follow basic cognitive rehabilitation. That’s when the depression spiral set in.

I had always prided myself on my ability to take in, process, and store large amounts of information. I had a 4.0 grade point average in nursing school, and didn’t even have to work very hard. Now I couldn’t remember how to add and subtract. I could no longer go skiing and rafting with my friends, couldn’t converse with any true intelligence, and began to sleep 12-14 hours per day. Seizure meds plus depression were shutting me down. I could still do things like work on my house at that point, but could only work a few hours per day. redoing was the last major project I did until 2013.

I got SSDI in 2008 after accepting I wasn’t going to recover fully. My depression continued until I just couldn’t function. I had a two good friends left, and they would come over every few months to reorganize my house. It looked like I was a hoarder, but it was just complete disorganization. They saved my life.

Then beer entered my life. Due to my situation, I was a cheap drunk, but was becoming a drunk nonetheless. I drank for a couple of years, didn’t for a year, went back for a year, and I’m now off the stuff for good. It wasn’t a good idea, but it did get me through the really bad part of my deteriorating cognitive function. I never drank during the day, though.The combination of being a cheap drunk, and being sober during the day helped keep my brain from turning into total mush.

About two years ago, things began to stabilize. Before my injury, I was an extremely avid reader. I still can’t make tin through a novel, but I began to read, and comment upon, news and opinion sites on the web. At first, I couldn’t make it through a one page story, and what comments I wrote were disorganized, and had very poor grammar. Very slowly, I began to read longer and more complex articles, and my commenting was becoming more cogent. After two years, I began to be followed by other folks, and was gaining a reputation as one who would make informative and to the point comments. What these folks didn’t know was that it would take me an hour to write something that others could write in five minutes. I had to constantly look up words for spelling, and would spend minutes deciding whether a comma was needed, or not. (Should I have put a comma after “needed”?)I also knew what I wanted to say, but would lose the word, and had to describe the meaning, and then search for the word on Google, etc.. This was some of the best therapy I have had.

At the present, I’m up to about 75% of my previous cognitive ability. I still can’t read a book, but if I give myself enough time, I can write fairly well. I sold my house and bought a 600 square foot condo, which is manageable. I’ve made a new friend, and feel like winter is turning into spring.

The next step is what I am doing right now: Writing an essay for the first time in ten years.

It isn’t hopeless. You just have to meet and accept the person you are now. This person resembles the one you used to be, but is not the one you are a now. Your skill set will have changed, but you will still have one. Your old friends may not have been able to cope with the loss of the person that they knew, but new ones will appear if you are open to the possibility.

Right now, life is good. I’m pleased to have found BIRRDsong. The next step in my recovery is to help and befriend folks who are going through what I’ve gone through. I know intimately the depression, grief, and hopelessness of losing a chunk of one’s life. I was a counselor for twenty years before my injury, and I hope to use the skills I still have to be productive and helpful. I have spent much my life in service to others, and I need to get back to that in one way or another.

Thanks for reading, and I hope this will be of some help to someone.

Chris Wheby

Joan Miller speaks on sober-driving on KGW

Once again, BIRRDsong co-founder Joan Miller has done a tremendous community service: she is on the local news again! Joan gives presentations year round about the importance of safe, sober, unimpaired driving. And she makes a special point to be even more vocal around New Year’s Eve. This is a really dangerous night to be on the roads because too many people think only of their fun in the moment. They don’t think enough about everyone’s safety and everyone’s chance at making it to ring in the new year peacefully.

Click on the link below to read a short article online about Joan’s experiences being hit by a drunk driver and about the work she and others in our community do to raise awareness of the importance of safe driving.

www.kgw.com/news/Portland-woman-hit-by-drunk-driver-urges-safe-NYE-237549891.html

Free Webinar from Brain Injury Association of America: Realistic Hope After Brain Injury

Realistic Hope After Brain Injury
December 17, 2013 2:00 p.m. ET

The Brain Injury Association of America (BIAA) is pleased to announce the creation of the Butch Alterman Memorial Webinar Series, a new series of free webinars that will be focused on and primarily for those who are living with brain injury. We are thankful to the Butch Alterman Memorial Fund which has supported us in the creation of this series.

What is the Butch Alterman Memorial Fund?

The Butch Alterman Memorial Fund was established by Maureen Alterman in memory of her husband and supports BIAA’s education efforts. Maureen established the fund to keep alive those things that meant the most to her husband, whose life centered around family, faith, serving his community via various charitable endeavors, educating his students, and serving his country through his military service in the United States Navy. Butch was an elementary educator for 35 years; his classroom motto was “let me teach so I can quench your thirst for learning.” He believed that education was the key to shaping his young students. The fund is the perfect way to educate those who have a thirst for knowledge about brain injury.

The inaugural webinar in the series will be offered on December 17, 2013. Our presenter will be Mark Palmer, author of Realistic Hope, developer of the Realistic Hope website, and 50-year survivor of a traumatic brain injury. He will discuss Realistic Hope after Brain Injury. Please join us!

Click on this sentence to go to registration for the webinar!

Please note this webinar does not offer any CBIS CEUs.

15 Tips for Surviving — and Enjoying — the Holidays with TBI

Flashing lights. Crowded stores. Loud family gatherings. The holiday season should be joyful, but it can often be overwhelming to someone who is living with traumatic brain injury.

If you are living with TBI, share these tips with your friends and family. If someone you love is living withTBI, the tips below can help you plan in advance to make the holiday season happier and more relaxed for all of your friends and family.

These great ideas came from members of BrainLine’s wonderful online community.


 

  1. Identify — in advance, if possible — a quiet place to go at gatherings if you are feeling overwhelmed. This gives you a chance to take a break, and lets your loved ones stay involved in the festivities.
  2. Avoid crowded stores and order gifts online instead.
  3. If you are shopping in stores, remember to make a list in advance and plan your trips on week days — either early in the morning or late at night when there are fewer crowds.
  4. Wear a cap with a brim or lightly tinted sunglasses to minimize the glare of bright lights in stores or flashing lights on a tree.
  5. Wear noise-reducing headphones or ear buds. These are also great gift ideas for loved ones with TBI if they don’t already have them.
  6. Ask a friend to go with you to stores or holiday parties.  They can help you navigate crowds and anxiety-producing situations.
  7. Plan in advance as much as possible. And ask your hosts what their plans are so you aren’t surprised by anything.
  8. Volunteer to help with the holiday activities that you enjoy the most and are least stressful for you.
  9. Remember to ask for help and accept help if it is offered to you.
  10. Ask someone you trust to help you with a budget to avoid overspending on gifts.
  11. Take a nap if you need a break.
  12. Remember that it’s okay to skip the big parties and plan to celebrate in a way that makes you comfortable and happy.
  13. Check in advance to see if fireworks are part of outdoor celebrations — and skip them if they make you uncomfortable.
  14. If flashing lights bother you, ask your friends and family to turn off the flashing feature on Christmas tree lights or other decorations when you visit their homes.
  15. You can let your host know in advance that you may need to leave early. It will help you feel comfortable if you need to get home or to a quiet place and it can also help avoid any hurt feelings.

This information is provided courtesy of Brainline.org and can be found here: www.brainline.org/content/2013/11/guide-to-survivingand-enjoyingthe-holidays-with-tbi.html.

Social Security Disability Benefits for Individuals with Traumatic Brain Injury

by Cheryl Coon

Although traumatic brain injury is not specifically listed as impairment in the Social Security Administration manual, it is included under the heading of cerebral trauma. The manual provides, in short, that traumatic brain injury cases will be evaluated primarily according to neurological criteria.

If you’ve suffered a brain injury and can’t work as a result, you may be eligible for Social Security disability benefits. When the Social Security Administration (SSA) evaluates your claim, SSA will look at the limitations that result from your brain injury, rather than the injury itself, to evaluate how these limitations may make you unable to work fulltime.

Even if your symptoms don’t seem severe, a brain injury can affect your life in many ways – some of which you may not notice but people around you might see. In addition, your symptoms will develop and change over time.

Because the brain controls your entire body, you may experience a wide range of symptoms. Look for any of the following:

  • cognitive disabilities (trouble paying attention, impaired judgment, short-term and long-term memory loss)
  • communication problems (aphasia/difficulty finding words, dysarthria/difficulty speaking, prosodic dysfunction/difficulty with tone of voice)
  • sensory problems (problems with vision or visual processing, tinnitus or hearing noises, feeling itching, tingling or pain without an obvious source)

Depending on the location of your brain injury, you may notice a variety of emotional changes too. Friends and family can help you identify these if you’re unsure:

  • depression
  • anxiety disorders
  • mania or bipolar disorder
  • obsessive-compulsive disorder
  • panic disorders
  • insomnia
  • loss of inhibition
  • impulsiveness
  • aggression
  • loss of initiative or pleasure in formerly enjoyable activities

Brain injuries can also cause a variety of physical symptoms:

  • blood clots
  • post-traumatic seizures
  • ataxia, myoclonus, and other muscle/motor disorders
  • hydrocephalus
  • vasospasm (constriction of blood vessels)
  • aneurysms
  • hormone imbalance, including hypothyroidism

This is not a complete list — if you experience other symptoms, or notice changes in your behavior and personality, be sure to talk to your doctor about how they may relate to your brain injury.

If a disability decision cannot be made on medical factors alone, your situation will be evaluated based on a variety of physical and/or mental limitations you may have that prevent you from working. These include:

  • How well you can perform physical tasks such as walking, standing, lifting, carrying, pushing, pulling, reaching, and handling objects; or
  • How well you can perform mental tasks such as understanding, carrying out, and remembering instructions; responding appropriately to supervision and co-workers; and dealing with work pressures.

Improve Your Chances for Obtaining Benefits!

  • See a doctor regularly and take the medication that he/she gives you so that your doctor can support your application for benefits.
  • Use a calendar to jot down notes about how you feel each day.  Ask family member to also keep notes of your functioning.
  • Record any of your usual activities you could not do on any given day.
  • Ask your doctor or other health care professional to track the course of your symptoms and to keep a record of any evidence of fatigue, depression, forgetfulness, dizziness, or other hard-to-document symptoms.
  • Keep records of how your illness affected you on the job.

Cheryl Coon is an attorney with Swanson Thomas Coon and Newton and can be reached at ccoon@stc-law.com or (503) 228-5222.  She is a past Board member of the Brain Injury Alliance of Oregon and a supporter of BIRRDsong.  Her practice is exclusively social security disability benefits and she helps people from initial application through federal court appeals.  Swanson Thomas Coon & Newton also represents people with brain injuries in personal injury cases and workers compensation.

 

David Kracke, Max Conradt and Max’s Law

Max Conradt is a lovely individual involved with BIRRDsong for many years. Max sustained multiple concussions in a very short time period playing high school football. That led to severe brain injury. It also led to his father and others taking action to find ways to protect our young athletes from the same situation in the future. This is how we got Max’s Law, a law that has been passed in more than half of the States in the U.S.!! This law made it mandatory for coaches to get training in how to recognize a concussion and how to know when a player simply must stay off the field or court to recover fully.

There are many articles in the papers and online about Max. We will be posting some of those here soon!

This one is a heartfelt article written by lawyer and brain injury advocate David Kracke. This article is several years old, and Max has a new story to tell now in 2012. But it’s very important to read this article to see what was going on in 2009 and to understand that his series of concussions led to severe, permanent brain injury.

Click on this link to read the article online:

www.oregonlive.com/opinion/index.ssf/2009/06/maxs_law_one_tragedy_that_need.html

David Kracke successfully represents many individuals with traumatic brain injury and is an expert in that area. He served on the Board of the Brain Injury Alliance of Oregon and is co-editor of their newsletter, The Headliner. We appreciate that he takes time from his busy practice to write these articles for the public. He helps us greatly with our work of raising awareness about brain injury.

You may contact Mr. Kracke at 503-224-3018 (preferred)

or david@craignicholslaw.com

Pointers for applying for Social Security Disability benefits

BIRRDsong Peer Support Coordinator Brian Liebenstein has some great pointers to share. If you are thinking about applying for Social Security Disability Benefits, read on!!

With Labor Day right around the corner, we should discuss how having a brain injury compromises the ability to labor. There are bound to be difficulties when the ability to concentrate, focus, and safely complete a task become compromised. Sadly, for many in the brain-injured community, such problems are not readily recognized. They are often dismissed as laziness or unwillingness to work. Because of this, there are some items to consider as you apply for Social Security Disability.

1. Write down all deadlines you are given and provide the information required as soon as possible. Don’t be afraid to add any information regarding the difficulties caused by a brain injury. This is important even if it doesn’t seem pertinent to your ability to work.

2. You will need verifiable sources for problems. This is an area where friends and family might be of great help. They can assist with lists of job needs, school requirements, or similar records. This information will show how your brain injury affects your capabilities. Having reports of difficulties in your work will prove beneficial in establishing the presence of a disability.

3. Do not be afraid to use the varied law firms which can provide representation in disability cases. Again, as you go to seek legal counsel, it is helpful to have documentation. This could be a report from a neuropsychologist or other tests of brain function. It could be that you were reported as constantly late or inattentive to certain tasks at work. However, the truth is that your injury affected the brain functions required to fulfill the task involved. Conveying such information correctly is better left in the hands of professionals.

4. Sometimes enough ability remains to reestablish a work situation. Checking with state employment personnel can determine if it is possible to do some work. You can often do this while still being entitled to disability payments. Do not let pride or stubbornness blind you to the difficulties resulting from a brain injury. You may need to accept disability payments for a while. You can find alternative ways to work where you can use your remaining talents.
If you keep asking for others’ input you can expect good results, but reaching your goal will take time. However, your labor to establish your inability to labor was worth the time and effort.